Comorbidity and Dementia: improving health care for people with dementia (CoDem) Dr Frances Bunn Centre for Research in Primary & Community Care University of Hertfordshire

Overview Comorbidity and dementia: improving health care for people with dementia(CoDem) Background and introduction to study Preliminary findings

Dementia and Comorbidity Funded by NIHR HS&DR Programme Led by University of Hertfordshire Collaborators: UCL, Cambridge University, Newcastle University, South Essex Partnership Trust September 2012-April 2015 Funded by Health Services and Delivery Research Programme

Background Many people with dementia may have other medical conditions Dementia often viewed as isolated condition Little is known about how services are organised for this vulnerable group or what constitutes ‘best care’ One study found that 61% of people with dementia had three or more comorbidities, 30% had vascular or heart disease (Doraiswamy et al 2002) Dementia often viewed as an isolated condition with little understanding of how other complex health needs might impact on patient and carer experiences or service use and provision.

In a previous study reviewing qualitative literature on patient and carer experiences we found 102 studies but there was little evidence relating to the experiences of people diagnosed with dementia who have an accompanying health condition.

Aims of study CoDem Aims One of first studies looking at health service delivery for people with dementia & comorbidity Aims Explore impact of comorbidities for people with dementia on access to non-dementia services Identify ways of improving integration of services for this population, reducing fragmentation and inappropriate use of care What is best practice/effective care for service delivery for people with dementia and a comorbid condition? How does the presence of comorbidities impact on access to health care and service delivery for a person with dementia, their carers and health and social care professionals? What are the barriers and facilitators for service delivery for PWD and a comorbid condition? How can current services adapt to meet the needs of PWD who have other complex health care needs?

Study focus Focus on 3 specific conditions: stroke, diabetes, visual impairment. Chosen because: Generally involve some form of external monitoring Require collaboration between primary & secondary care Common in older people Diabetes – self management may be complicated by presence of dementia VI – may exacerbate confusion Our main focus is on three exemplar comorbid medical conditions, stroke, diabetes and visual impairment; all of which generally involve some form of external monitoring and require collaboration between primary and secondary care. Stroke and diabetes are chosen because they are common in older people and are thought to exacerbate or influence the progression of dementia. Moreover management of these conditions, in particular self-management, is likely to be complicated by the presence of dementia. Visual impairment is also prevalent in older people and may exacerbate confusion. In addition, the ability to cope with visual impairment is reduced if a person also has dementia

Research Plan Phase 1 Review of international literature Analysis of population cohort database Phase 2 Interviews people with dementia/family carers Focus groups with clinicians involved in their care Phase 3 Highlight interventions to support continuity & equity of access Stakeholder conference to develop and refine guidance There are three phases to our research (talk through phases). We are currently undertaking phase 1 and I am going to be presenting some of the preliminary finding of our scoping review. Research Plan

Theoretical framework Study is informed by theories about continuity of care* Continuity may refer to: Relationships between patients and practitioners Co-ordination across services & over time Information transfer Coherent delivery of services for people with long term conditions Our study is informed by theories about continuity of care. Navigating the different systems of care is particularly difficult for this population, not least because they receive advice and support from health and social care and increasingly third sector providers. Processes of care may be further complicated for people with dementia and other comorbid health conditions. Continuity of care is a complex, multi-dimensional, concept that is co-constructed arising from interactions between patients, carers and professionals. It may refer to relationships between patients and practitioners, coordination across services, information transfer and coordination of care over time, and the coherent delivery of services for people with long term conditions * Freeman et al 2000. Continuity of Care: Report of a Scoping Exercise for the SDO programme of NHS R&D.

Scoping of literature Review aim Included studies that looked at: understand current knowledge on the range of comorbid disease amongst people with dementia & the impact of comorbidity on experiences and service Included studies that looked at: Prevalence of comorbidities in people with dementia Quality of care & access to services Current systems and structures Patient & carer experiences

Scoping of literature Included 54 studies 28 focus on prevalence Other areas include quality of care, self-management, experiences & views Type of comorbidity Diabetes 23, VI 14, Stroke 9

Prevalence Prevalence of 3 target conditions in people with dementia (from scoping review) Diabetes 10%-26% Stroke 3%-34% Visual impairment 4%-29% A number of studies looked at prevalence of the three target conditions in people with dementia. The percentage of people varied from study to study – this may be accounted for by variations in the populations in the study – for example some looked at people in hospital, some community based populations and some people in nursing homes

Quality of care Found 9 studies comparing access to care in groups with & without dementia 8/9 studies found some evidence that quality of care or access to services was poorer for people with dementia compared to those without dementia Less likely to receive monitoring for conditions such as diabetes and visual impairment Reduced access to treatment such as intravenous thrombolysis for stroke, surgery for cataracts Bayer et al 1994: Comorbid condition is neglected –professionals and carers have low expectations about the need for specialist diabetes care Zhang et al 2010: Given less attention by professionals – less likely to use optometry services or diabetes health services Doucet 2008: Suggests management of diabetes patients often inadequate and inadequate follow up of these patients Sinclair 2000: Less likely to attend a diabetes clinic than those without dementia Yarnall 2012: 23% never saw a health professional about their diabetes. Guijarro 2010: less likely to have cataract surgery Lopponen 2004: less likely to be diagnosed with glaucoma

Issues relating to continuity Barriers to continuity Carers feel excluded from decision making Lack of joint working Problems with self-management Models of care focus on single condition Poor communication between teams Carers role & experience not recognised Lack of understanding & knowledge

Interviews – people with dementia and family carers Objective: to understand how having Dementia & comorbidities impacts on access to health care and service delivery Aiming to recruit 10-15 people with dementia with each comorbidity (and/or carer) Currently recruited 13 people with diabetes, 5 VI, 2 stroke Recruiting participants in the East of England and the North East

Interviews: Preliminary findings People with dementia & carers Variation in care Carer has significant role in managing condition, medication, appointments etc. Some people reported negative experiences around transfer of information, lack of awareness amongst hospital staff HCP prioritise comorbidity over memory problems Social isolation Variation in care being received - Some see a regular GP and report positive experiences - the GP knows the patient and all their health conditions Positive experiences of community nurses visiting some patients in their home Diabetes - PWDs/carers often think of diabetes as a lesser condition compared with other health problems There are some negative experiences of hospital stays due to poor transfer of info and lack of staff training E.g. staff were unaware of patient’s dementia. Didn’t know how to manage PWD Carer managing condition – includes giving meds, taking bloods, blood pressure, adjusting meds (with and without discussion with HCP) HCP – focuses on their specialist area and not taking into account memory Social isolation – both PWD and carers often confined to home, PWD stops reading even if previously keen readers

Communication of information Issues emerging about the transfer/communication of information ‘So it seems that within the hospital setup they don’t always transfer all relevant information between departments’ (Carer) it didn’t actually say on his notes that he had dementia, which would have been quite useful.. it’s on his diabetic notes but it obviously hadn’t gone through to the eye screening bit’ (Carer talking about husband with dementia attending eye screening apt) Carer is responsible for coordinating healthcare and transferring information across different services

Management of condition HCP prioritising comorbidity over dementia “Any changes to medication … mum wasn’t able to cope with it and she couldn’t remember what the nurses or the doctor had said and they didn’t realise that she wasn’t remembering ….and.. they weren’t consulting me at the time and so I, ..I was concerned that, you know, I didn’t want to come over one day and find her in a diabetic coma or something.” (Daughter referring to mother with dementia) Also shows the HCP prioritising comorbidity over memory. The daughter had told the nurse (repeatedly) about her mother’s deteriorating memory. But the nurse visited the PWD at home and adjusted her meds and told the PWD about the change – ignoring the daughter’s concerns about memory problems. The PWD couldn’t remember what the nurse had told her.

To conclude Preliminary findings suggest lack of continuity of care, poorer access to services CoDem due to be completed in April 2015 Study will add to our understanding of how having dementia impacts on the management of other health conditions. For more information contact f.bunn@Herts.ac.uk

Funder This presentation presents independent research commissioned by the UK National Institute for Health Research (NIHR) under HS&DR (Grant Reference Number 11/1017/07). The views expressed in this paper are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. The sponsor of the study has no role in study design, data analysis, data interpretation or writing of the report. Fore more information contact f.bunn@herts.ac.uk